PIP

If only it were that simple. The PIP assessment is one of the harshest in the benefits system and it’s not what the claimant says they can or cannot do that matters, it’s what the assessor decides in conjunction with the supporting medical evidence the claimant must provide to back up everything they say. Fibbers mostly fail the PIP assessment, as opposed to ending up on the enhanced rates.

When my now 15 year old was an ambulatory wheelchair users people would say to me "well at least he's not autistic, that would be really hard". Then my now 17 year old was diagnosed with autism and people said "well at least he's not a wheelchair user". You couldn't make it up really. I think the PIP/DLA awards really depend on who is assessing. I know someone who has identical twins with identical disabilities who got different awards. She won't appeal in case the higher one gets moved down. My ds1 got lower rate care awarded when he was 9 that didn't need renewing until he qualified for PIP. I didn't ask it to be assessed again in case it was taken away from him. I applied for PIP and he got standard rate for both care and mobility. But they wouldn't back date it to when I filled the form in, in fact they wouldn't let him have the PIP until his DLA ran out a few weeks later. My DS4 was on middle rate care and high rate mobility. At renewal I expected it to go down from high to low rate mobility as he had recently learnt to walk. He went down to nothing. It was a year before I braved the forms again and he got middle rate care, low rate mobility which is what I thought he should have. There seems to be so much unfairness in the system.

@Angrymum22

It has shocked me how some breast cancer patients start claiming PIP before they have any treatment. Most have to appeal and yes some have a whole host of problems but many just apply because breast cancer qualifies you for disabled status ( in order that you are not discriminated at work when you need time off).

I don't know anything about this but the criteria are the same for all. It's nothing to do with diagnosis.

But again, judging other people because of your bad experiences isn't helpful for anyone.

The comments the assessor made totally ignored the information we provided. Basically because DH could sit in front of the computer and answer questions meant that he scored zero. He told her he couldn’t prepare a meal or organise his finances or bills or keep a track of his medication, added to that he needs a knee replacement and has COPD apparently had no bearing on his application. We haven’t even attempted to get in the list for knee replacement because of the stroke. I am well aware of the hidden difficulties. I take medication that causes major joint and muscle weakness and life changing fatigue but because I can, on good days operate fairly normally I don’t consider it merits claiming PIP. Life would be so much easier if I could employ a cleaner but I struggle on because I know that there are people who need assistance more than I do.
It has shocked me how some breast cancer patients start claiming PIP before they have any treatment. Most have to appeal and yes some have a whole host of problems but many just apply because breast cancer qualifies you for disabled status ( in order that you are not discriminated at work when you need time off).
All I’m pointing out is that stroke victims are not easy to pigeon hole in the PIP system and the Stroke Association are lobbying to make the system fairer for them because they don’t slot easily into the simple assessment.
DH can communicate but struggles with moving from one activity to another. He can’t plan routes and struggles with the concept of time, so will start getting ready too late and allow himself 5mins for a 20min journey. If the phone rings it takes him too long to recognise what the noise means. The same happens with the doorbell. He misses phone calls and deliveries.
It’s fine if I’m around but left on his own he will forget to eat and drink because he doesn’t recognise the signals. It’s difficult to describe his cognitive difficulties to someone who may have no training in cognitive loss.
It is infuriating that the assessors have such narrow criteria and are unable to waver from the yes no style answers. DH couldn’t even fill in his form because he can no longer write, but that’s ok because he can use a keyboard or dictation function on his phone.
He can’t work and his world has shrunk immeasurably but that doesn’t seem to count.
I have friend with fibromyalgia who is living the life. She no longer works which I understand but has no where near the day to day problems DH has. She has periods when it flares up and she has to rest but DH sleeps for 75% of the day. His brain just switches off. It takes him days to get over a trip to the cinema. He doesn’t complain and has accepted that this is his future. I hope with time that the fatigue improves but it is like living in limbo. We are in our late 50s/early 60s. It gets me down thinking that this is it.

I asked because I claimed and was awarded PIP before ADP took over.
We're in Scotland.

My son has just claimed ADP for the first time. I was wondering how different the process was now it's ADP?

I had a phone assessment and it really bothered me.

I have fibromyalgia, osteoarthritis and bowel problems. I absolutely hate telling people I have fibro as there's so much judgment on the condition. Plus it's so different for each person. Someone with it can probably hold down a job, albeit with great difficulty and cost physically to themselves and others like me have been signed off work by my GP as each day is different and the pain can strike any body part and be equally debilitating. The fatigue is beyond a joke. I sent my PIP forms off last week but I don't hold out much hope. I've put off the process for a couple of years as I heard how awful it can be. One of the questions about wiping your own bottom?! Well yes I can most days but the days when my back gives out and the pain is unbearable my dh has to help me on and off the toilet. But that's not everyday but it is totally unpredictable. Or I could by walking in a shopping centre and my hips will collapse. Once again not everyday but regularly. I have used my wheelchair for extreme fatigue days. It's horrible. I have very little life compared to what I once had. Horses, great social life, hiking etc. But say the word Fibromyalgia and people assume it's a nothing illness that overweight middle age women claim to have. I have had so many medical tests my latest was a brain scan last week. My doctor is so thorough so I have medical evidence but I know I'll probably fail. My poor dh works 6 days a week so we can afford to live with increasing costs. I have heated blankets which I used most of the time so all adds up to the electric costs plus medication costs. My bowel is such that I need to be close to a toilet during a flare up which strikes anytime. Honestly it's rotten. So anyone reading this thread please believe anyone who has a hidden disability that they need the extra help PIP may provide them.

Please don't make judgements on others. It's not you against them. We all need it to be better.

I couldn't agree more. I think people often go down the anecdotal route of thinking they know more than they do. 'Oh, I know someone who ... ' or 'Everyone I know ...' but really we don't know about other people's lives. PIP has been designed as a tough system. It is tough for everyone and my heart goes out to everyone who finds themselves on the gruelling PIP treadmill.

Why do you ask?

I'm not sure if it's me specifically or if you are interested in the ADP process on a general level?

I was awarded over a year ago (I applied as soon as I could) and it was paper based. No assessment but a huge amount of evidence.

I got a 10 year award enhanced on both.

Hotpinkangel19 I used to be similar and went without for a very long time. Eventually I had no choice anymore as my 'pride' was affecting everyone around me's standard of living...

@keye was your case decided on the papers alone or did you have an assessment?

There is a legal procedure, it's nothing to do with pride but I totally understand the thought process there. It's hard enough suddenly becoming disabled without having someone who may not have any background in the medical field relevant to you disability deciding you can do X because you do Y

I think when claiming PiP it's important to recognise an award carries much more value than the financial aspect. For instance I mentioned upthread (I think) about it providing recognition and opening up certain 'disabled' spaces. Maybe not appropriate in your DH case but worth a mention all the same. Without ADP (I'm Scotland) I would have no way to easily 'prove' I'm disabled.

That's what the DWP rely on.

Nearly 80% of tribunals are successful, but fewer than 10% of claimants apply to them, because they can't cope with the stress.

No. But DH is very proud and didn't appeal as he didn't want to beg for money. Although it would have helped enormously with his independence.

That's horrific, and I would assume overturned at MR?

When the longterm damage results in mobility, cognitive and behavioural change they don’t have a box that it fits in.

They do. There is a 2 part section regarding mobility and the cognitive impairment will come under various descriptors under the care side.

Please don't make judgements on others. It's not you against them. We all need it to be better.

PIP baffles me, it really does. My DH had a work accident, leg ripped off at the scene. Turned down for PIP as it's not a permanent disability!

Have you seen what they wrote on their forms and the medical evidence they sent? They may also have diagnoses you're unaware of

I am on a breast cancer support forum where a significant number of members are successful in their PIP applications. It seems that most are far more able than DH, certainly no cognitive problems and judging by their posts they do not have the mobility issues DH has. What they do have is significant issues with their mental health post cancer which seems to swing the decision.
I’m not saying that the average person with depression is more likely to receive an award. Just that stroke victims are not accommodated within the PIP assessment. When the longterm damage results in mobility, cognitive and behavioural change they don’t have a box that it fits in.

Many stroke victims complete rehab without a great deal of medical intervention particularly if they recover well. But that’s where treatment stops and you fall off the cliff edge. There is little more that rehab can offer if you reach the limit of possibilities.
GPs tend to write you off and unless you need a care package you are pretty much left to get on with it. Yearly checks for BP but no sit down for a quick check on how you are coping.
Mental health in general is far better supported even with the scant service available. When DH was discharged from the stroke service the GP surgery didn’t even acknowledge it. When I was discharged from the breast cancer team I had a lovely chat with one of the GPs.
Even the stroke association are at a loss why PIP is so difficult to qualify for stroke victims.
DH is very independent but only because I let him think he is. Behind the scenes I organise all the financial side of our life along with his every day needs. Yes he can pop his tablets out of the foil packet and mostly remember to take them, but is not able to work out when they are running out and need reordering. He uses an inhaler, unless I check ( it’s easy to see how many doses left) he will carry on using an empty one for a few days until he starts to have breathing difficulties.
DH has paid tax and NI for 40+ yrs and has never claimed a benefit in all that time. Now when we could do with a little help with his care it’s not available.
I am considering claiming for myself under the breast cancer umbrella just to see if I fare better.

Just as an add on only 27% of disabled people work full time. I did not become disabled until 37. Was I suspose to retire!? I have two Oxford degrees and kept going otherwise what a blinking waste. There is nothing wrong with my brain and my career is C Suite however no one makes it easy for me. I even had one employer forget to tell me the lift was broken and I would need to climb five flights of stairs. I left soon after as my mobility issues were not 'chic'. Bastards.
We never know what is around the corner and before my illness I was a long distance runner. A little compassion is not much to ask.

I think quite often people assume the bar is much lower than it is to qualify. Perhaps it’s all the press making our disabled people are bludgers, but you really do have to be quite significantly impaired to be awarded DLA or PIP.

but if you have mental health issues it’s much easier.

It most certainly is not @Angrymum22. And it is best not to presume it's easier for ANYONE. The system is a steaming, putrid mess and seems to have been devised by, and is administered by, people who lack empathy and who have no understanding of flux and nuance.

It’s a ridiculous benefit. I have been trying to claim it for my DH who had a stroke last year. He struggles with mobility and pretty much all tasks but because he can wipe his own arse, lift his hands above his head and walk unassisted 200m ( despite it taking him at least 10mins) he scored zero. We did ask for a review because the initial assessor made some rather presumptuous observations. She didn’t consider he had any cognitive problems, he has.
She assumed he could feed himself, he can but has aphasia which means that I have to prepare food that is easier to swallow. He struggles with fine motor skills in his dominant hand so can make a cup of tea but cannot butter a piece of bread or use a knife to cut meat.
All of this was ignored.
Strike victims often have difficulty claiming it but if you have mental health issues it’s much easier.

Ostagazuzulum I'm incredibly pleased to say I'm wrong about automatically losing PIP at 65, but I've been being told that's the case and it's been being used as a reason to try and recover a debt (incurred through a hospital social worker making a mistake not anything I did wrong) at maximum weekly amounts.

You lose PIP if you are in hospital for 28 days or more, or return to hospital within 28 days of your last inpatient stay regardless of length.

My PIP rates fluctuate according to what rubbish Capita/Atos etc come out with at reviews, not my disability fluctuating - it only ever goes downhill. I'm deteriorating as a result of the conditions, a lifetime of overusing my body, and age.
You do usually get what you have lost back eventually, through appeal, but by then the interest on the loans you've had to take out to cover survival, wipes out everything.
Examples of PIP review rubbish are claiming: I "walked into the room with ease" Interesting. I've been in a wheelchair for more than a decade and a half!
"experiences heart palpitations which she worries about." Nope, my heart can stop signaling and my organs shut down, leading to unconsciousness and death if I'm not got to resus, fitted with a central line in my neck and copious amounts of chemicals pumped into me for days in HDU. I don't worry about it, I wouldn't get through a day if I did. But how did he translate that into 'palpitations?'
"She refused to straighten her legs." No, I was born with rickets, my bones are visibly bent! I have no way of following the command to straighten my legs!
I was "able to speak clearly and concisely" then why were you shouting at me that you couldn't understand me and I needed to make more effort? I actually illicitly taped that one, as it was the tip of the iceberg of a large sports physiotherapist standing over me shouting and making accusations.

Note that an under employed sports therapist is who is being used to decide how multiple disability affects someone who has MRI's, x-rays, and multiple consultants reports.
The process is designed to humiliate and treat disabled people as potential fraudsters. Your friend may be less keen when she's had a review.

(They are so far behind that my review that should have happened this autumn has now got a decision date of Dec 2024)

As Tome Tome rightly says "You find out about each benefit or accommodation almost by chane and it’s so far from straightforward it’s a joke."

WaitingForMojo · Today 09:12

@Elleherd that is awful and I wish I was surprised.

small piece of good news though is that you won’t lose pip at 65. If you’re awarded prior to retirement age, you continue to be eligible.

@WaitingForMojo I've just come back from a long hard day to find this! It isn't a small piece of good news, it's huge and life changing for me! * *I can't thank you enough! I have been being told otherwise for some time by DWP debt recovery, and told to prepare for a very miserable difficult future which tbh I wasn't sure I could face. When I previously googled it seemed they were correct. What's coming up now is so very different and is going to make such a difference to my future as well as eradicate the fear I've been living under, as without mobility allowance I'm literally trapped at home unable to go anywhere.
I'm looking forward to calling debt recovery tomorrow and telling them they've been wrongly taking maximum repayments of me and scaring me for no good reason and the game is up!

In all honesty the DLA/PIP is not the hardest part for disabled people. It’s a heave but not the same push as ensuring education and health. I think people imagine that those experiencing difficulty accessing these things are either borderline or particularly poor at forms or disorganised. The truth is it’s an enormous amount of work particularly if you are living with a more challenging condition anyway. You find out about each benefit or accommodation almost by chance and it’s so far from straightforward it’s a joke.